Alex RKThe desperately sad case of An NHS Trust v ST & Anor [2023] EWCOP 40 provides an example of how far the courts have come in terms of thinking about capacity since the early days of the MCA 2005, and poses some perhaps challenging questions about its future. ST was 19, and had spent the past year as a patient in an intensive care unit. She had a rare mitochondrial disorder which is a progressively degenerative disease. According to the clinical evidence before the court, there was no cure which might have enabled ST to resume her life outside the clinical setting of the intensive care unit. She was mechanically ventilated through a tracheostomy. She was fed through a percutaneous endoscopic gastrostomy tube and was undergoing regular haemodialysis. Her disease had resulted in a number of related health problems including impaired sight and hearing loss, chronic muscle weakness, bone disease and chronic damage to her kidneys and lungs. The collective view of her treating team was that ST was in, or was fast approaching, the final stage of her life.
Her treating Trust’s plan was to move to a treatment plan of palliative care. That path would involve a much less invasive regime for ST. Dialysis would end and there would be no further attempts to resuscitate her in the event of a further major respiratory arrest such as had already occurred twice. As Roberts J identified at paragraph 2 of the judgment:
Her treating clinicians are keenly aware of the need to involve ST as far as possible in how she would wish to be cared for and what steps might be taken to ensure that her last days or weeks of life were as comfortable and pain-free as possible. In preserving respect for her personal autonomy to make these choices, they have met with a fundamental obstacle which, on the case advanced by the Trust, is her apparent refusal or inability to accept that her disease will result in her early, if not imminent, death. It is that inability, or “delusion”, which the Trust relies on as rendering her incapacitous to make decisions for herself [in relation to future medical treatment].
The questions before the court were (1) whether that was the case, and (2) whether ST had capacity to conduct the proceedings.
As Roberts J further identified at paragraph 4:
At the heart of the issues in this case is what ST and her family perceive to be a ray of hope in the form of an experimental nucleoside treatment outside the United Kingdom which might offer her hope of an improved quality of life, albeit a life which is likely to end prematurely in terms of a normal life expectancy. She has told her doctors that she wants to do everything she can to extend her life. She said to Dr C, one of the psychiatrists who visited her last week, “This is my wish. I want to die trying to live. We have to try everything”. Whilst she recognises that she may not benefit from further treatment, she is resistant to any attempt to move to a regime of palliative care because she wants to stay alive long enough to be able to travel to Canada or North America where there is at least the prospect that she may be accepted as part of a clinical trial.
Unusually, perhaps, the Trust sought to advance the case that ST lacked capacity in the material domains in the face of evidence from two psychiatrists involved (there being no independent experts instructed). Both the liaison psychiatrist involved in ST’s case and a consultant psychiatrist instructed by the Trust considered that ST had capacity to make decisions about her future medical treatment, and neither considered that ST had an impairment of or disturbance in the functioning of her mind or brain. However, the consultant leading her care, Dr A, whilst accepting that he could find no evidence of psychological disturbance or brain damage, was concerned that “she is unable to weigh up the pros and cons of what he described as ‘a dignified death’. As such he believes that she is suffering from a delusion which derives from a false reality in that she cannot contemplate her own death” (paragraph 31).
As Roberts J identified, the starting point was the decision that ST had to make, and the information relevant to that decision, which at paragraph 77 Roberts J set out as being:
(i) the nature of her disease and the fact that her disease is responsible for the deterioration in her respiratory condition;
(ii) the assessment of her medical team as to prognosis;
(iii) the available options in terms of active treatment including the likelihood of that treatment being available and its chances of success;
(iv) the fact that a small insult arising in the course of her care or management or the further development of her disease (such as another respiratory arrest) may cause potentially fatal clinical instability.
She then made clear that she considered that:
78. In terms of the functional test of capacity, a person’s ability to understand, use and weigh information as part of the process of making a decision depends on him or her believing that the information provided for these purposes is reliable and true. That proposition is grounded in objective logic and supported by case law in the context of both the common law and the interpretation of MCA 2005.
The case law Roberts J referred to was Re MB (Medical Treatment) [1997] 2 FLR 42, Local Authority X v MM [2007] EWHC 2003 (Fam) and Leicester City Council v MPZ [2019] EWCOP 64, Roberts J noting at paragraph 83 that:
Whilst it is clear that the strict terms of the MCA 2005 omitted a ‘belief’ requirement from the wording of ss. 2 and 3, it is clear from Local Authority X v MM that the approach taken by Munby J subsumes the requirement for belief within the statutory limbs of understanding, using and weighing as part of the decision-making process. In this context, and in terms of a patient-centred approach, it is important in my judgment for the court to consider the extent to which the information provided to a person is capable of being established objectively as a “fact” or a “truth”. The less certain the fact or truth, the more careful the court must be when determining whether the presumption of capacity is rebutted.
Applying this to the facts of ST’s case, Roberts J continued:
84. In this case I accept that ST is aware of the nature of her disease in terms of it being a mitochondrial depletion syndrome which is rare. She knows that she is one of few people in the world to have the disease. I further accept that she knows the disease by its nature is progressive and she recognises that, at some point in the future, she may succumb to its effects and die. What she fails to understand, or acknowledge, is the precariousness of her current prognosis. She does not believe that her doctors are giving her true or reliable information when they tell her that she may have only days or weeks to live. She refuses to contemplate that this information may be true or a reliable prognosis because she has confounded their expectations in the past despite two acute life-threatening episodes in July this year and because she has an overwhelming desire to survive, whatever that may take.
85. As to the ‘truth’ or reliability of the information which ST is being given by her doctors, I am quite satisfied on any objective basis from the body of medical evidence before the court that it is the mitochondrial disease which is causing the progressive failure of her respiratory muscles and the general deterioration in her overall condition. It is not the residual after-effects of long-Covid as ST believes it to be.
86. Because she clings to hope that her doctors are wrong, she has approached decisions in relation to her future medical treatment on the basis that any available form of treatment is a better option than palliative care which is likely to result in an early death as active treatment is withdrawn. In my judgment she has not been able to weigh these alternatives on an informed basis because (a) she does not believe what her doctors are telling her about the trajectory of her disease and her likely life expectancy, and (b) she does not fully comprehend or understand what may be involved in pursuing the alternative option of experimental nucleoside treatment. Whilst I accept that she recognises that it may not be successful in terms of the outcome which she wishes to achieve, she has failed to factor into her decision-making that there are, as yet, no concrete funded offers of treatment, far less offers which might offer her even the smallest prospect of a successful outcome.
In the circumstances, Roberts J found:
93 […] ST is unable to make a decision for herself in relation to her future medical treatment, including the proposed move to palliative care, because she does not believe the information she has been given by her doctors. Absent that belief, she cannot use or weigh that information as part of the process of making the decision. This is a very different position from the act of making an unwise, but otherwise capacitous, decision. An unwise decision involves the juxtaposition of both an objective overview of the wisdom of a decision to act one way or another and the subjective reasons informing that person’s decision to elect to take a particular course. However unwise, the decision must nevertheless involve that essential understanding of the information and the use, weighing and balancing of the information in order to reach a decision. In ST’s case, an essential element of the process of decision-making is missing because she is unable to use or weigh information which has been shown to be both reliable and true.
Roberts J accepted the proposition advanced by the Official Solicitor that “an individual who expresses hope that they will survive, or even a belief based on that hope, does not, without more, become incapacitous simply because they disagree with the medical advice they are given.” However, on the facts of the case before her, Roberts J found that:
94. […] ST’s fundamental distrust in, and refusal to accept, the information she is given by her doctors as to the likely timescales of her deterioration, do not simply operate to impair her ability to make a decision. They prevent her from understanding, using and weighing the information in the context of the options available to her in terms of future care planning. Dr A expressed himself to be entirely open to discussing these options with ST. Indeed, he saw it as an essential part of the care he was providing as her lead treating clinician. She was unwilling to engage with him at all on the subject because she does not trust the information he has given her. Dr D [the liaison psychiatrist] did not raise with ST the question of alternative options and what palliative care might look like in terms of an alternative. Dr C [the consultant psychiatrist] confirmed in his evidence that ST was unable to weigh up any decision about palliative care because she failed the functional test.
That then brought Roberts J on to consider whether ST’s inability to make the decision was caused by an impairment of or disturbance in the functioning of her mind or brain. Roberts J, relying on the observations of MacDonald J in North Bristol NHS Trust v R [2023] EWCOP 5, reminded herself that:
97. That issue is a question of fact for the court to determine. The wording of s.2(1) MCA itself does not require a formal diagnosis before the court can be satisfied as to whether an inability of a person to make a decision in relation to the matter in issue is because of an impairment of, or a disturbance in the functioning of, the mind or brain. This test is not further defined in the Act. As the court made clear in the North Bristol NHS case, to require a specific diagnosis would not only be undesirable, it would constrain the application of the Act. The court, instead, is fully entitled to have regard to the wide range of factors that may act in any individual case to impair functioning of the mind or brain and, most importantly, to the intricacies of the causal connection or nexus between lack of ability to take a decision and the impairment in question (see paragraph 47). There is thus no requirement for the court to be able to formulate precisely the underlying condition or conditions which constitute the impairment.
It was accepted, Roberts J further reminded herself, that ST did not suffer from any recognised psychiatric or psychological illness. However, having reviewed the evidence before her, Roberts J continued:
103. In my judgment, and based upon the evidence which is now before the court, I find on the balance of probabilities that ST’s complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain. Her vulnerability has been acknowledged by Dr C. I need no persuading that she has been adversely impacted by the trauma of her initial admission to hospital. That trauma is likely to have been exacerbated by the length of her stay in the ITU unit. Her brother acknowledges that she has been surrounded by patients dying around her on the unit as the months have gone by. Whilst she has been sustained by the near continuous presence of her mother and, to a lesser extent, the other members of her close family, she has endured almost a year of intensive medical and surgical intervention which has been both painful and distressing for her. She is frightened by the prospect of dying and clings to her desire to survive what her doctors have repeatedly told her is an unsurvivable condition. The cumulative effect of her circumstances over such a prolonged period, her profound inability to contemplate the reality of her prognosis, and a fundamentally illogical or irrational refusal to contemplate an alternative are all likely to have contributed to impaired functioning notwithstanding the resilience which ST has displayed in her determination to carry on fighting. It is not necessary for me to seek to further define the nature of that impairment. I am satisfied that it exists and that it operates so as to render her unable to make a decision for herself in relation to her future medical treatment.
The Official Solicitor was clearly concerned about such an approach, submitting that “the Trust’s reliance on the same beliefs which impair ST’s decision-making ability under the first limb of the test in s.2(1) MCA to found the existence of an impairment under that section is circular and undermines the importance of the second question in s.2(1).” However, Roberts J identified that:
104. […] In my judgment that is to misunderstand the Trust’s position and the basis of my finding that, on the balance of probabilities, the impairment in ST’s functioning has been established. It is not simply the failure to believe the advice she is receiving and thus her inability to understand, use and weigh information in the decision-making process which informs the finding of impairment. It is informed by a holistic evidence-based overview of ST’s lived experience on the ITU and the trauma she has suffered as a result of the intensive treatment she has required over the past twelve months. That trauma has manifested itself in acute episodes of distress and anxiety and a presentation which suggests a hyper-vigilant state where she is continuously watching for her mother and requiring her constant support on an almost daily basis.
Roberts J found that she could not see what further steps could be taken to help ST to make a decision, such that future decision-making must take place on a best interests basis.
The second question before the court was as to ST’s capacity to conduct the proceedings. ST was represented by the Official Solicitor, but also present in court were leading and junior counsel who were instructed directly by a solicitor on ST’s behalf as (as Roberts J described them at paragraph 9) as her ‘informal’ legal representatives. They cross-examined the medical witnesses and made final written submissions in relation to ST’s capacity to make the substantive decisions required of her and to conduct the proceedings. As matters turned out, the final position of the Official Solicitor and the position of ST’s informal representatives were more or less aligned. Given Roberts J’s conclusions as to ST’s capacity to make decisions about her medical treatment, however, she could not allow the quantum indeterminacy position of representation to continue, and had to make a determination as to whether, in fact, ST had or lacked litigation capacity. Her conclusion was clear:
106. Despite the view of Dr C and the position urged on me by Mr Garrido KC and Mr Quintavalle [ST’s informal representatives], I am satisfied that this is a case where ST lacks capacity to litigate without the assistance of a litigation friend. Capacity to litigate includes not only an understanding of the issues in the case but an ability to understand, use and weigh the arguments on the evidence so as to give instructions in relation to the arguments of other parties who may take an opposing position. Given my findings in relation to subject matter capacity, it is difficult to conceive of circumstances where ST might be said to have full litigation capacity but lack subject matter capacity. I am concerned about the lack of information in which Mr Foster of Moore & Barlow came to be instructed and whether the origin of that instruction was ST herself or her family. I offer no criticism of their involvement in this hearing. They attended at the invitation of the court in order that the court might have the benefit of full argument. In that respect, the attendance of Mr Garrido KC and Mr Quintavalle at this hearing has been of considerable assistance to the court.
Comment
It is important to emphasise that the decision in this case was fact-specific, and it should not be read (as the Official Solicitor was clearly concerned that the approach adopted could be read) as equating to the simple formula: “patient believes what doctor is saying => patient has capacity; patient does not believe what doctor is saying => patient does not have capacity.” In this regard, it may be useful to watch this shedinar on how to read a Court of Protection judgment to understand what Court of Protection judges are doing when deciding a specific case before them.
That having been said, Roberts J’s observations about the continuing importance of the concept of belief within the structure of the functional test contained in the MCA are of wider relevance: see further here for more on how the language of the MCA maps onto clinical and social work realities.
Some might well be challenged – as it appears was the Official Solicitor – by the approach taken to the so-called (but, as this case shows, entirely inaccurately so-called) ‘diagnostic test.’ It is entirely understandable that, having reached a conclusion that ST could not – functionally – make the decisions required of her, Roberts J sought then to explain why that was the case within the four walls of the MCA 2005. The alternative (as the liaison psychiatrist, Dr D, appears to have considered) would have been to identify that this was a case falling within the scope of the inherent jurisdiction. At that point, however, very difficult questions would have arisen as to the circumstances under which it would have be legitimate to deploy the inherent jurisdiction of the High Court to make decisions in relation to medical treatment in circumstances where it could not be said (on the face of the material recorded in the judgment) that ST was subject to undue influence or coercion.[1]
It is therefore entirely understandable why Roberts J sought to bring the case within the scope of the MCA 2005. At that stage, it is one thing to say that there does not need to be a formal diagnosis before the court (or indeed anyone else) can reach a conclusion that someone lacks capacity for purposes of the MCA 2005. However, Roberts J appeared to be (and I would say rightly) aware that she was engaged in a sensitive task of, in effect, having to set out a formulation of an impairment / disturbance[2] in the face of clinical evidence that one did not exist. It would be interesting to speculate whether the involvement of a psychologist would have assisted here in terms of clarifying matters. And, to reiterate, her conclusions were fact-specific, and did not represent a general invitation simply to ‘invent’ an impairment or disturbance in difficult situations.
More broadly, the case does throw into sharp relief the question of the place of the ‘diagnostic’ test – a test which has been abandoned by the Republic of Ireland in its newly implemented Assisted Decision-Making (Capacity) Act 2015. Its history and purpose is summarised in section V of this article, but, as the article suggests, revisiting that test must be a matter for Parliament, rather than the courts.
Finally, in relation to litigation capacity, it is very unusual indeed, but on the facts of this case clearly an appropriate exercise of the court’s wide case-management powers, to have a situation in which P has both ‘formal’ and ‘informal’ representation. One anticipates that this would not have been a step that the court had been taken had there not been evidence before it to suggest that there was at least an arguable case that P had litigation capacity.
[1] Although see here for an examination of how subtle interpersonal influences might be.
[2] At the risk of engaging in remote (and lay) diagnosis, it might be thought that ST’s presentation had, on the evidence before the court summarised in the judgment, to have many of the features of ‘adjustment disorder.’
